Terry S.

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  • Terry S.
    March 1, 2018 at 2:16 am

    Hey Lisa. Don’t be shy to ask. Everyone is different but in the end its GBS even if you are lucky it’s not as bad as another. I thought mine was bad but I have read cases much worse then mine.
    I have had RLS for years, before this GBS thing. Nothing really worked well for me but to get up and walk around. Now with GBS and being paralyzed that’s not so easy. My pain meds I’m on for GBS help some but not totally. I hope someone else can give you a better answer.

    Terry S.
    March 1, 2018 at 12:42 am

    I had radiation just before it started so all of the doctors involved thought it was a radiation injury in my back. It’s possible that the course of the syndrome was done and that could be why nothing was picked up in the L puncture. It was done about the third week of being in the hospital.

    Terry S.
    February 27, 2018 at 2:39 am

    Not many people here.

    Terry S.
    February 27, 2018 at 2:38 am

    Ok thank you. They say it was GBS but didn’t know at the time so I never got either of the two main treatments offered, the IGIG or the plasmaferesis thing I have been reading about on many sites. I’m trying to learn as much as I can.

    Terry S.
    February 26, 2018 at 2:29 am

    Hey Jim. I have one of those chairs that stand up. Pretty helpful but costly. It can help with reach but you have to have a knee brace on. If you forget it your screwed but it also helps with weight baring exersize.

    Anyway. Here’s a funny one. Or kind of anyway. Before my GBS thing… I opened a door to a building for an older gent in abouts his 80s on a scooter. He said as he looked up with a smile and rode in,,, “When I get upstairs I’m gonna help you down here some day”.

    Terry S.
    February 26, 2018 at 2:06 am

    I never had the IVIG thing but I had shortness of breath during the GBS attack and after mostly when in a crowd or when a friend was asking me multiple questions for example. Like being severely over whelmed.
    I still don’t have full lung strength and I now think it’s another symptom of GBS now that I have the diagnosis a year after it happened because I have read in many sites that some people had to have breathing support during the attack and even others who were in a coma or were put into an induced coma. Turns out this syndrome can hit anyone at any level and I kinda feel lucky it didn’t stop my breathing or affect my head.
    I’m tired of trying to recover because a year later I’m still trying to walk the length of a Half block. Not near that yet, my lungs get too tired first and then I feel weaker and as if I could just collapse. Must keep on tho even tho my PT is a nasty old thing with no compassion. She just thinks I shoulda ran a mile way back. She makes my lungs get tight just thinking about her before I go in. I’m hoping soon my lungs recover so I can do a block and at least make it to 7-11 some day, just to be able to do it. Ya,,, haha 7-11 is my goal and has been for a year now. I’ll get there.

    Terry S.
    February 26, 2018 at 12:54 am

    You are lucky. I have to admit I am too. My GBS wasn’t mild but for sure not as bad as I have read some went through. I’m at a year still trying to walk un assisted on a walker. Have patience and do what you can to make the day the best it can be. It’s all in you to get the best of it you can but to know when things will be physically better is not possible.
    My prognosis is with in a year,,, after a year already.
    Good luck.

    Terry S.
    February 25, 2018 at 11:55 pm

    Ha. A read through most of the first page then replied and then I saw your post saying it’s been answered and diagnosed. Good luck with it and yes, it’s been a year for me. Supposedly doc thinks in this year if I keep at it I could be walking on my own without a walker. You might recover fully faster having had a lighter case of it.

    Terry S.
    February 25, 2018 at 11:21 pm

    I wonder if you are still having issues with it. From what I have read it could very well be GBS because we are all different and I have read on other sites that a lucky few do get off with no pain. Especially lighter cases.
    Some people go into coma, some don’t. All depending on ourselves and our immunity how bad each of us gets it.
    If you are not sure it’s stopped tho you should get checked. There is supposedly a certain protein in body under attack and also something that shows up in the spinal tap.
    There is also rare but possible chance of another event. Be sure.
    I had severe pain at first, weeks before the leg weakness. Some get pain after paralysis. I am a year out. Still in a lot of pain and discomfort even to sit and laying down. Still trying to walk unassisted. Good luck and make sure.

    Terry S.
    February 25, 2018 at 11:01 pm

    Haha, I figured it out. Hope to see many soon.